Perhaps not surprisingly with all the activity around Rare Disease day over the last month, I have focused on this and it does not appear to be slowing down in terms of momentum. I was contacted today by a representative of a rare disease foundation to request adding their disease into the ODDT app. Over the last year we added a number of additional lysosomal diseases in response to meeting their families at World 2013, but today represented the first time someone had requested a disease added by emailing from within the app!
This made me think perhaps I should put something out there to let others know what may help in enabling adding their disease. So here goes some simple ideas and also some useful links.
1. Normally when adding a new disease we look for a high resolution striking unique image (could be a logo) to add to the app.
2 We look for one or more hashtag that is something you and the community would use to identify the disease in every tweet.
3. If you have researchers that want to share information that is open – you could encourage them to tweet it and this will be kept in the app if you endorse it or get them to add #ODDT in the tweet.
4. Ideally it helps if one or more person in the specific community is an active Twitter user.
The app also searches the web using google alerts. The ODDT paper describes in more detail our motivations and some background as well as some slides, some uses of the app from experience with different rare disease groups and ideas for the future.
I could also imagine a time when anyone can add their disease or topic from within the app..but we may need to get an NIH grant or something to do that.
Leave a Reply